My Father’s Final Gift To Me Was Showing Me The Way To Die
After Almost Seven Years With ALS, It Came Down To 12 Minutes Past Midnight
The whole thing starts because my father couldn’t button his work shirts anymore, and my mother thinks he has a pinched nerve.
She forces a man who never, ever even catches a cold, let alone gets physicals, to go to a family doctor.
I find out during my Saturday morning phone call. Itself an interesting thing.
A typical phone call on a weekend goes like this.
I call on Saturday morning, knowing Dad would answer, and Dad answers, knowing it’s me calling.
Dad: Hello, it’s your dime.
Me: What’s the temperature?
Our exchange always starts off like this and the script never deviates, no matter what.
It originates from the John Hughes movie Planes, Trains and Automobiles, starring the inimitable John Candy.
It could be 95 degrees with a heat index of 115 and we stay on script.
After chatting a few minutes, my baby brother Luke gets on the phone.
Me: C’mon Luke. Do it.
Luke: No, Dad will get mad again.
Me: So? No, he won’t. (giggling)
Luke: Easy for you to say, you are thousands of miles away.
Me: 679, not thousands. Stop being so dramatic.
Luke: Okay… (big sigh)
[He takes a deep breath. I hear a whistling, rustling intake of air, then…]
The phone crackles with feedback from the volume of his bray.
“The bray” is something that I find funny as all hell, it is very loud and abrupt, and he gets in trouble for it, but I always get him to bray.
I start laughing convulsively.
I hear my father bellow in the background, “Lucas Andrew, how many times have I told you!!” followed by a string of expletives and blasphemy.
The receiver drops to the floor in the ruckus.
Luke shrieks, “Heather told me to do it!” as he runs off, the sound of his indicting me fading as he runs away.
I hear the phone being picked up.
My mother’s clear, smooth voice greets me, “Well, good morning to you, daughter. Now your father is all upset.”
“Oh, Mama, you know it’s just a joke, he’ll be fine. Dad isn’t really upset. He loves that sh*t.”
“You are 23 years old, you would think that you would have outgrown this kind of immature nonsense by now. When I was 23, I didn’t call home and incite my brothers to shout and cackle and make my father angry.”
I sigh. “Yes, mama. But Dad likes it secretly.”
“I think there is something wrong with your father,” my mother reports, unruffled, moving on.
“What now? There is lots wrong with Dad. Tons,” I snicker. I make a PB & J sandwich for myself and wait for the verdict of whatever the problem is today.
Dad never gets sick, so it can’t be that. I take a huge bite of my sandwich and chew thoughtfully while I await her pronouncement.
“I think he might have a pinched nerve or something. He can’t button his shirts.”
A cold finger of dread drags along my spine. I swallow and set down the food. Not hungry anymore.
“What do you mean he can’t button his shirts? I don’t understand what you mean. He can’t use his fingers or he can’t use his hands? Or what?” I dictate questions. I try to keep panic out of my voice.
“It’s strange. He isn’t able to push the buttons through the buttonholes anymore.”
I feel suddenly lightheaded.
“Is it both hands, Mama? Or just one? I thought you had bought him snap button shirts anyway?”
A ridiculous thing to point out.
My father had a horrible, ignorant way of ripping all the buttons off his shirts when he was furious by just tearing open his shirts, so my mother “solved it” by buying him snap button shirts for decades instead of traditional button shirts. Like that was going to make his hands work by pointing that out.
“He has button shirts, Heather. He hasn’t used snap shirts in years,” Mama says. “That isn’t the point. Should I be worried like this?”
I am a nurse.
Therefore, everyone asks me all the medical things before they went to the doctor, even though I have repeatedly told them not to. I have zero training or ability to do anything for them. They blew me off and never listened.
“Mom! You need to take him to the doctor. Will he go? You know how he is. And the doctor isn’t open after work so he will actually HAVE to take a morning off or something,” I say worriedly.
Dad never takes days off, ever.
I could only think of one time Dad went to the doctor that I ever remembered, and that was for a CDL license physical that he had to do for work, so it was not a huge deal to get him to go.
He also went to the ER once after work because he cut the end of his finger off.
Even then, he freaking waited until he was done with the job at hand, then he went.
He took the stitches out himself when his finger healed.
The man never gets sick and doesn’t “see the need” to go to the doctor.
“I think he will because he is scared. I can tell he is scared,” Mama says soberly.
“I already told him that there was a new Italian general practice doctor over at the hospital and he said he would go if I made an appointment because I found a male Italian doctor for him,” she adds.
A huge knot forms in my stomach. If Dad is agreeing to see a physician, it really must be a serious thing to him. He really must be actually worried.
I am officially scared.
“He is on the fence,” Mama sighs. “Here, you talk to him again.”
“Yes, daughter?” Dad’s deep voice fills my ear. “Your mother has been spilling secrets?”
“Just go, Daddy,” I urge over the phone. I am also newly pregnant.
“You are working outside all day. You are getting old…er. You probably lifted something that was too heavy because you never listen,” I say scoldingly.
He laughs, his signature barking bellow. “What? ‘I’ don’t listen? Who is pregnant again? And how dare you. I am far from old.”
“Shut it. Not about me! Quit stalling!” I trill.
My Dad is diagnosed with ALS (Amyotrophic Lateral Sclerosis) in early December 1997 after almost a year of vague, progressive, neurological symptoms.
ALS is an extremely rare neurological disease
that involves the nerve cells (neurons) responsible for controlling voluntary muscle movements. Voluntary muscles produce movements like chewing, walking, and talking. This disease is progressive — the symptoms get worse over time.
There is no cure for ALS.
Nor is there any effective treatment to halt or reverse the progression.
I am almost 9 months pregnant when he calls me about his final appointment to confirm the diagnosis.
We both are weepy.
No one tells him that there isn’t hope, he says in his deep voice.
I hang up and remember my father, Specimen of Man, who appropriated an ancient fire truck after running a mile through a forest with a pair of cut off jeans on and nothing else, putting out a fire singlehanded and saving our home.
I sob into the night.
We find many people diagnosed with ALS, or “Lou Gehrig’s Disease”, start off their bizarre search for answers with similar stories.
Stumbling over a curb…
Choking on water…
Can’t catch a baseball…
Innocuous to anyone, yet the end result of many months of testing, increasingly invasive? Ruling out everything else?
There is absolutely no hope with ALS.
Not for my father in the winter of 1997 turning into 1998.
Nothing. No cure, no medications, zip.
It is a “go home and get your sh*t together right now” diagnosis.
His doctor says, “Maybe 2 years, usually we see 6 months. I am so sorry. Your symptoms began in January 1997.”
My mother sobs. My father sets his jaw. They just didn’t understand Dad. My father is a stubborn Italian Catholic.
He prays his rosary to Our Lady every morning at 4:30 AM before leaving for work as a paving construction superintendent in rural Pennsylvania.
He has for twenty-five years.
He has his civil engineering degree, my mother and six children.
He …doesn’t give up easy.
2 years pass and my father is still working. This has caused a small rift within the family.
Half thinks Daddy should be off work and on disability, spending all the time he can with Mama, Luke (still at home), doing fun shit and things he always worked too hard to ever enjoy himself doing.
The other half thinks let him be him.
Dad will begin the process for applying for disability, which his doctor says will be granted immediately since he is terminally ill.
Dad says he will stop working as soon as all the paperwork is done, completed, signed and in hand, and the benefits are on their way. He doesn’t want the family to have to go without.
The doctors on his team are amazed. They have him going to a University two hours away to have his blood taken for analysis.
They want to see if there is something special he has that other people with ALS don’t have.
He is very slowly weakening. He has limited use of his left (non-dominant) arm, however, full use of his right.
He has involuntary muscle twitches all over his body, called fasciculations.
That is all. No other symptoms.
Finger weakness, of course.
Three years after diagnosis… an imperceptible change occurs, and a more rapid progression of his symptoms begins.
My father is still waiting for his disability to be approved.
It is denied two times.
Ridiculous. Infuriating. It is increasingly harder for him to work. Actually, too hard. He mostly does desk work. His employer is incredible.
It astonishes us all how truly accommodating they are, it proves how much they have valued my father the years he worked there, the lengths they have gone to continue his employment.
After three separate attempts and three and a half years pass, my father finally is approved for total disability benefits. By all accounts, it is believed they stalled to see if he would die before they had to pay out. It is despicable.
By 2001, my father has quit working.
He is extremely sad, and he feels worthless. He has never not worked like this.
He takes to watching TV, sitting in his wheelchair for hours. He isn’t allowed to exercise because he is to preserve his muscle mass by not overexerting it. He cannot build any new muscle anyway.
His joy in eating, along with one of the greatest loves he had, cooking and creating in the kitchen… is gone.
Food is too dangerous. He is reduced to blended foods and Ensure. Even these are iffy.
Another step must be taken to keep him from starvation.
He has a G-tube inserted so he no longer chokes with the fear of aspiration pneumonia along with ensuring he receives enough nutrition every day.
Now his meals are not enjoyed, they are scheduled.
His favorite shows to binge-watch are M*A*S*H* reruns and the Back to The Future Trilogy.
Pre Streaming, these were all purchased on DVD. (Dad would have loved Netflix and Hulu).
We collectively begin to dread the opening bars of the M*A*S*H* theme song. He watches hours and hours of the show and everyone is tired of it.
He also does not want to be treated like an invalid or like he was different.
With ALS, one keeps their cognitive ability completely intact and loses all motor function.
Dad despises being treated the way he is by people who pat him and speak to him as though he is intellectually challenged. These assumptions are made solely due to Dad’s slurred speech patterns, and later on, because he is mute.
He has slurred speech due to his weakened jaw, mouth, and tongue muscles.
No matter how we try to explain, few outsiders “get it”.
Also, people think this disease has surely changed my father’s stance on end of life issues.
My father refuses to even discuss euthanasia. Ordinary means of life are allowed, food and water, he says.
Nothing extraordinary, like a ventilator and he means it. He wants my mother to swear to it.
He would never consider suicide. He is insulted anyone would think he would.
Only one time does he address this issue.
He explains he is not questioning why God allowed this to happen to him, nor does he believe it is up to him to decide when to end his life. He believes his life was never fully wholly his to choose with what to do in the first place, and how dare anyone think “they” are the ones to decide?
He looks deeply at me to see if I understand. I nod. I take his hand.
My father continues, saying he always prays for God’s Will to be done, every day. This illness must be God’s Will. He explains to me praying for God’s Will every day doesn’t just mean “God, I will do your will, but only when it is easy.”
My father hugs me to his strong chest and I hear his heart in my ear. Rhythmic and regular.
This profoundly shakes me.
I will never forget that talk.
His faith is never shaken one moment by his diagnosis or any of the horror that follows.
In his words — he offers it, every moment, to his Blessed Lord and his Blessed Mother for the redemption of souls and just goes on with his day, however it goes.
That is the essence of my father, to the chagrin of my mother, who is much angrier than he and has little interest in looking into any of this for “deeper” meaning.
In fact, she confesses to me she believes my father asked for Divine suffering to be given to him.
I say to her the faith she denies is much stronger than she lets on if she actually believes God would do such a thing to Daddy. I suggest she should pray for Daddy in regards to her thoughts.
Since Dad has an outrageous and infectious sense of humor, we rely on humor to get us through the absurd and awful aspects of ALS.
Dad is scared to death of horror movies, so we switch his DVD of Back to the Future, which all of us are beyond tired of… with The Blair Witch Project.
This earns us being chased around the living room, narrowly missing being run over by Dad’s specially outfitted billion-pound Jazzy® wheelchair.
Dad and I are almost thrown out of my little sister’s high school graduation in 2001 for laughing too much during the ceremony, my fault for instigating it by pointing absurd attire out to my father, a long pastime.
Luke switches the cream Mama uses when he has to suffer the humiliation of using Adult Depends — from some no-name stuff to KY Jelly, and we tease him over who he is expecting to come over for “a visit”, wiggling our eyebrows.
When my father loses his deep, mellifluous voice, one of the particular horrors as the disease progressed, I feel as though a family treasure has been stolen.
It strikes me my children will never know his voice.
The voice that always calmed their cries as babies, in its deep soothing baritone richness.
It is September 11, 2003. We spend the day letting a parade of family and friends in to say goodbye.
They sit next to his bed. Hold his hand, speak quietly.
He is in the huge family room. Cathedral ceilings, wood beams, light and airy… he had built it himself over twenty years ago.
He is half asleep most the day, his Bi-pap machine on.
The priest has been performing the Rites, blessings.
His mother (my grandma) sits and cries along with his sisters and brothers.
We pray a rosary beside his bed in a circle.
At last, it is just all us kids, Mama and Daddy.
About 10 pm.
“We are going to the hotel, will have a drink and call it a day,” says my big sister. Her husband nods, my two older brothers nod behind them.
“Okay,” says Mama.
“I’m here with you,” I say. One of my daughters is asleep in the downstairs bedroom.
14-year-old Luke is in his upstairs balcony bedroom.
Mama and I take up our vigil, each to a side. Dad is seemingly sleeping.
We talk about the day, about Dad. We change Dad into fresh clothes and all that entails.
Luke abruptly appears on his balcony, inside the living room.
“Stop throwing things at me, Heather!” he says, loudly.
I twist, looking up at him in frank disbelief.
“Luke, look at me. I am holding Dad up so Mama can change him. What the hell are you talking about?!” I say, tiredly.
He looks behind him into his room, then looks down at us.
“You… you didn’t just throw a drumstick? Y-you didn’t just th-throw a drumstick up the st-stairway at me?” he asks shakily.
He looks over his shoulder again.
Luke leans a little over the balcony. “Heather, Mama, I swear I just got hit in the back with a drumstick from my drum set down there. I promise! I did!” He shivers.
I look up and my eyes meet Mama’s. She shrugs and shakes her head slightly.
“Look, Luke, it wasn’t us. We are changing Dad. I don’t know,” I say.
He sighs loudly. “Fine.” Stomps into his room.
I sigh, too. What the hell?
We finish changing Dad, getting him situated. His favorite Ave Maria CD is softly playing as background music.
I sit next to my father. I take his cool, dry hand.
It is about to strike midnight. Dad’s eyes open. He opens his mouth.
“I think he wants me to wipe his mouth,” Mama says softly.
She takes his Bi-Pap mask off and tenderly wipes Dad’s mouth. She puts balm on his lips so they won’t dry out.
His eyes are… open. Wide open.
He hasn’t been this awake in days.
“Mama, please don’t put that right back on yet. Daddy seems okay. He isn’t acting like he does when he wants it right back on,” I say, mesmerized by my father’s bright blue eyes, unaffected by the ravages of ALS.
She nods and sets the mask down.
She resumes holding Dad’s hand and looking on him.
Suddenly, Dad shocks me.
He turns his head to look directly into my face.
I am speechless… for a moment.
What is actually happening strikes me and I begin to sob.
I lift his huge hand to my face. My father has huge hands. His wedding ring is a size 12. Shrunken from illness, they still are formidable.
I press his palm against my cheek and say, “I love you so much, Daddy. It’s okay. It is really okay. I love you so much,” through a flood of tears.
His eyes pierce me.
And then he smiles!
He smiles at me and this completely does me in.
I have not seen my father’s real smile in two years.
“Daddy… I… I-it ohhh… I love you,” I manage in a strangled voice. I bury my face in his hand, overcome that I am given this gift.
I peer up and watch.
He is turning his head.
He is turning his head on his own.
His eyes scan the world around him.
I feel as though he is seeing something far different than knotty pine and thick dark-stained beams.
His eyes rest on my mother, who is sobbing in wonder.
His face is turned toward her, 180 degrees from me.
He looks upon her. Love is radiant, flowing from his eyes, his face.
He smiles again, so bright, so impossible, a smile of love.
One last breath in.
Fly on, Daddy.
12:12 — September 12, 2003
Bittersweet Symphony is the memoir written in honor of Heather Wargo’s upbringing in rural Pennsylvania by an Italian father and Irish mother. Preview another excerpt here:
My Father; Budding Arborist and Fire Truck Thief
A Comedy Memoir in Two Parts Regarding My Father, Specimen Of Man
It is in its final editing stage.